Experiences of people with ME/CFS with COVID-19

[Forebearance]

I decided to copy my experiences with what I think is COVID-19 from the comments section of a blog to here. I hope that's okay. If anyone else wants to add their experiences to this thread, please feel free to do so.

As soon as the virus was loose in my community, I picked up a weird cold while out doing errands. Even though I was washing my hands and trying not to touch my face, I got something that I think was COVID. It would be typical of my immune system to get it immediately.

My county doesn't have enough tests for everyone, so they told people with mild cases to just isolate at home. I will try to get an antibody test when they become available to find out if I did have it.

I've had it from March 12 to April 1, so far.

• Forebearance on March 22, 2020 at 7:01 pm
  I’m almost over it! My Enzyme Defense did not arrive in time. So the most helpful things have been my salt inhaler, Xclear nasal spray, and meditating.
• 
  Forebearance on March 24, 2020 at 2:05 pm
  Update: Lauricidin and 7 Precious Mushrooms extract have been my most important supplements. I was taking them for granted! I had been taking twice as much as usual for a week, and I felt like I was getting too inflamed, so I stopped them for a few days.
  Boy do I regret that! The virus came roaring back, right as I was almost over it. It is a really stubborn illness. Really hard to kick out.
• 
  
• 
  Forebearance on March 26, 2020 at 3:03 pm
  Whew! Lauricidin saved my hide again. I am better.
  If you are going to try it, please remember that when it kills viruses it will increase your level of inflammation. So start it gradually and always take it with some kind of anti-inflammatory.
  I use mushroom extract, but whatever your favorite anti-inflammatory thing is would probably work too. Hey, aren’t enzymes anti-inflammatory? If they are, then the perfect combination might be Lauricidin plus Enzyme Defense.
  Also, please get lots of liquids, fiber, magnesium and vitamin C. That way the dead viruses will be excreted quickly. The dead viruses feel toxic.
  I only had a mild case, and it lasted 14 days. It is no joke. Everyone please fight the good fight, and try to keep yourself out of the hospital!
  
  
  -----------
• 
  
• I thought I was over it after 14 days, because I felt much better. But I still had a slight bit of head congestion and a slight sore throat that came back every once in a while for a short time. I continued isolating at home.
• 
  
• Then on day 21, I felt unusually tired. That night a powerful sore throat came back along with red, swollen eyelids. They looked like allergy eyes. I was concerned so I took an extra dose of Lauricidin. (I had been back to my regular maintenance dose of it).
• 
  
• Today is day 22. I feel like I'm on the mend. But with this stuff, who knows!
• My Enzyme Defense is still on backorder.

 

[Not dead yet!]

As for me, I'm having a gut infection. The fever I had for a couple of weeks broke once I started Levaquin. Definitely a bacteria. Gut infections for me are not new. But I don't want to be exposed to Covid while I"m fighting something else. I also have red swollen eyes, even weeping eyes at night with crust in the morning. It's "yellow rain" time here, so I imagine that's due to the pollen.

I hope your enzyme defense shows up soon.

 

[Forebearance]

Thank you, Not dead yet! I hope you feel better soon!

Day 22 -- that night I was reluctant to take another dose of Lauricidin, because I was afraid it would cause too much inflammation, which would cause insomnia. But then I found that I couldn't sleep anyway, so I took the Lauricidin. That night I lay awake until 4:30 AM while the Lauricidin and the virus battled it out.

Day 23 -- I woke up feeling weak, tired, and better. Whew. I think it might be over.

I got a call from the health food store. My Enzyme Defense is in! ha ha!! It figures.

 

[jaminhealth]

Wow and thanks for sharing. Since the start of all this I've been taking 2K Vit C three times daily and then of course, my 25 yrs of Grape Seed Extract plus I've been in a lot in the last couple yrs due to knee damage and not driving anymore. Added zinc/copper combo and I'm good and I WILL NOT GET THE STUFF. I call it stuff....

 

[Forebearance]

I hope you don't get it, Jam! Even my mild case of it was kind of grueling.

 

[jaminhealth]

I hope you don't get it, Jam! Even my mild case of it was kind of grueling.

Thanks me too, but I have it planted in my mind I won't. I had the Asian Flu back in 56 and no flu since, but what I've ALWAYS done is start with Oscillo at the first signs of any signs of a flu... and I know this a w hole new ballgame but I'd do the same thing here too. And there there is the school of people who say 40K or more die every year of the regular flu. And no discussions and all those deaths in spite of the vaccines. A lot of strange strange goings on with this flu.

 

[Forebearance]

I went through a whole box of Throat Coat tea!

 

[jaminhealth]

I went through a whole box of Throat Coat tea!

Before I started with Pycnogenol in 1995, and stayed with it for a year, and found Grape Seed Extract and with this one now 24 yrs, I was the sore throat Queen...no sore throats in 25 yrs soon, I was 57 and now going on 82. Could be Missing a Good Thing.

 

[Lorita]

I have been looking for stories of ME patients with COVID-19 and there are very few I can find so far - if anyone has any further resources please let me know.

I am in Spain in a COVID-19 hotspot and I went into total lockdown almost 6 weeks ago. On day 11 I started developing symptoms - extreme tiredness, painful lymph nodes, and pain at the base of my lungs. This was too long for an incubation for normal flu or colds, I never get allergies, and have never had respiratory problems. Two days before that my (healthy) partner had developed symptoms - we had been together up until the quarantine. So we assume we both have / had it. He had a typical set of symptoms, fever, cough, flank pain etc. He's OK now but it took him 30 days to recover full health. There was nothing linear about his recovery.

Anyway after two weeks of those symptoms (I had no fever or cough, but I also haven't had normal flu or cold symptoms since the onset of my ME) I started to feel better. I thought I was recovered for about 5 days but I did have some weird digestive issues I thought weren't connected. Then my lungs started hurting again, but worse and in a wider area, and I have started having shortness of breath, which is more scary. I also still have painful lymph nodes and profound muscle exhaustion. And also weirdly, symptoms of a mild cold (sneezing and runny nose, not supposed to be covid symptoms but actually they are presenting in a wide variety of ways - and I have been nowhere near another person nor out of my house for 6 weeks now so can't be a normal cold).

My anecdotal takeaway so far:

- This illness isn't linear; be alert and rest even when you think you're better. It can come back or present new symptoms.
- We're still learning about it so what doctors are saying are 'typical symptoms' is still evolving knowledge.
- It can last a lot longer than people say, even for healthy patients let alone people with ME/CFS.
- I am taking liquid zinc with vitamin C and it really seems to help. Steam also helps the lungs.
- My experience with ME is I never develop fever, lots of mucus, or coughs in normal flu or colds (all of which are healthy immune responses to get rid of a virus); so that's why I assume cough and fever is also not showing up in the way my covid-19 presents. However my lung pain and shortness of breath as well as my other symptoms indicates some level of infection. I feel as though I am currently at very low risk of the kind of cytokine storm that kills people - after all that is due to a strong immune reaction.
- On the other hand I feel as though this could go on for weeks because of the sluggish immune response.

I have ordered an oximeter ( it roughly measures oxygen levels in the blood, ME patients are thought to have poor oxygen uptake in any case) which will arrive tomorrow, because without fever symptoms or cough, and with our health system overloaded no doctor would bother with a test for me. And I'm not serious enough to warrant using those resources right now, I can still get out of bed, shower etc. But the real danger sign is in dropping oxygen levels in the blood. This will help me keep an eye on that.

If anyone else has thoughts / experiences please share.

 

[Not dead yet!]

I have been looking for stories of ME patients with COVID-19 and there are very few I can find so far - if anyone has any further resources please let me know.

I am in Spain in a COVID-19 hotspot and I went into total lockdown almost 6 weeks ago. On day 11 I started developing symptoms - extreme tiredness, painful lymph nodes, and pain at the base of my lungs. This was too long for an incubation for normal flu or colds, I never get allergies, and have never had respiratory problems. Two days before that my (healthy) partner had developed symptoms - we had been together up until the quarantine. So we assume we both have / had it. He had a typical set of symptoms, fever, cough, flank pain etc. He's OK now but it took him 30 days to recover full health. There was nothing linear about his recovery.

Anyway after two weeks of those symptoms (I had no fever or cough, but I also haven't had normal flu or cold symptoms since the onset of my ME) I started to feel better. I thought I was recovered for about 5 days but I did have some weird digestive issues I thought weren't connected. Then my lungs started hurting again, but worse and in a wider area, and I have started having shortness of breath, which is more scary. I also still have painful lymph nodes and profound muscle exhaustion. And also weirdly, symptoms of a mild cold (sneezing and runny nose, not supposed to be covid symptoms but actually they are presenting in a wide variety of ways - and I have been nowhere near another person nor out of my house for 6 weeks now so can't be a normal cold).

My anecdotal takeaway so far:

- This illness isn't linear; be alert and rest even when you think you're better. It can come back or present new symptoms.
- We're still learning about it so what doctors are saying are 'typical symptoms' is still evolving knowledge.
- It can last a lot longer than people say, even for healthy patients let alone people with ME/CFS.
- I am taking liquid zinc with vitamin C and it really seems to help. Steam also helps the lungs.
- My experience with ME is I never develop fever, lots of mucus, or coughs in normal flu or colds (all of which are healthy immune responses to get rid of a virus); so that's why I assume cough and fever is also not showing up in the way my covid-19 presents. However my lung pain and shortness of breath as well as my other symptoms indicates some level of infection. I feel as though I am currently at very low risk of the kind of cytokine storm that kills people - after all that is due to a strong immune reaction.
- On the other hand I feel as though this could go on for weeks because of the sluggish immune response.

I have ordered an oximeter ( it roughly measures oxygen levels in the blood, ME patients are thought to have poor oxygen uptake in any case) which will arrive tomorrow, because without fever symptoms or cough, and with our health system overloaded no doctor would bother with a test for me. And I'm not serious enough to warrant using those resources right now, I can still get out of bed, shower etc. But the real danger sign is in dropping oxygen levels in the blood. This will help me keep an eye on that.

If anyone else has thoughts / experiences please share.

I bought an oxygen concentrator and even at 4 Liters setting, it's almost too strong for me. I always had nearly 100% oxygentation, even during the time when I had lung problems and it should've been lower. I don't use oxygen well, but I think it builds up in my blood. This is very dangerous because using an oxymeter, I look fine. But my body can't use oxygen very well. Also treatment with more and more pure levels of oxygen will lead me to negative side effects of too much oxygen very quickly. I've learned that it helps, but i have to be very careful with it.

The latest news articles say that the virus can linger for 2 weeks before first symptoms are seen (that's when it spreads), and unlike many viruses which are self limiting in 5-7 days, this one can cause symptoms for 2-4 weeks. Usually after symptoms appear, week 2 is when ARDS will hit a person. If it does, the survival rate is 50%.

That's what I've gathered so far from reliable sources like Reuters. I think the medical agencies aren't updating what we know fast enough. We're all playing catch up to stay ahead of the developments. I think the 50% number is not accurate, but a description of the confidence of doctors treating the sick. For now, it's an acceptable assumption.

If you have both an oxygen concentrator and a CPAP, you have a basic ventilator. But remember my warning about too much oxygen, and be cautious.

 

[Forebearance]

Oh Lorita, I understand what you are saying. I also am worrying that my immune response might not be strong enough to get rid of the virus.

I am on Day 37 now and it still hasn't completely gone away. I am basically over it but the sore throat keeps reappearing and my ears are still crackling with congestion. My nose runs a little bit when some congestion breaks up.

I'm so glad you have the zinc and Vitamin C. Those things helped me too. I hope that you will get completely better. What if it does leave us people with ME/CFS with even more profound muscle exhaustion than we already had??? Or more profound fatigue? It's a scary thought.

 

[Forebearance]

Week 9 -- Circumstances led to me becoming very over tired. One night the COVID-19 virus decided to try to make a comeback. I woke up in the middle of the night with a horrible sore throat of the same raw type as before. And the heart pain was back. It was really scary.

So I went back on my extra doses of anti-viral supplements. I had gone back to normal doses because I thought I was over the illness. It seems to be working to suppress the virus again. Whew.

I wonder how long this virus continues to live in a person.

 

[Forebearance]

I ended up experiencing the virus trying to make a comeback two nights in Week 9, two nights in Week 10, and two nights in Week 11. Each week the symptoms were a little less. Every time it happened I got up and took extra Lauricidin and was able to fight it back down into submission.

Whew. It is now Week 13 and it SEEMS to be gone, but I am still taking extra anti-viral supplements. I'm not taking any chances. And I'm still waiting for a reliable antibody test to become available in my area.

 

[jaminhealth]

Thanks Fore for posting your path here. That coconut oil is so so beneficial....anti viral, anti bacterial, anti fungal... Good to hear you are feeling better.

 

[Forebearance]

I can't believe it, but I am experiencing another reactivation of the stupid Coronavirus. For the past three nights I have had a stuffy nose, slight sore throat, terrible insomnia and a tiny bit of heart pain. They are my classic symptoms and every time they come back they are a little less, except for the insomnia. And of course the constipation which feels like excreting rocks.

It's impossible for me to know if the virus comes back in some kind of a cycle, or if I might have been re-exposed to it at the grocery store.

I want to add that I spray colloidal silver up my nose every day, and it did nothing to help with COVID-19. I suspect that colloidal silver is a better antibacterial and antifungal than it is an antiviral.

 

[jaminhealth]

Fore, are you convinced this is all from remnants of Covid?

Do you as a general rule take A,B,C,D, Zinc and so few take Grape Seed Extract but it's my salvation in so many ways.

And magnesium, 2-3 capsules thru the day...also a salvation in my life.

I don't deal with CFS but other stuff and things don't reverse with age.

 

[Forebearance]

Yes, I am convinced of it. They are a unique set of symptoms that keep repeating.

Of course I take all that stuff and grape seed extract. I think I probably take the GSE because you mentioned it years ago! Thank you for caring!

 

[jaminhealth]

Sorry to hear your added challenges...just grasping for straws here...do you take Iodine?

Iodine, the most effective agent for killing viruses - Why Iodine can change the world

Updated March 24, 2020, to include more information about nebulizing. After an estimated 30 million people died in the 1918 Influenza Pandemic, governments around the world spent 25 years studying influenza viruses looking for the best agent to kill the viruses. Iodine incorporated into masks...

whyiodine.com

 

[Apo Sci]

I had coronavirus about two months ago. I went into it following a low inflammation diet-no red meat, veges, vit D3, extra vitamin C (1.5g/day),no artificial sweetenter, low vegetable oil, hemp oil for EPA, avoided GMO roundup foods (commercial grains and meats). Live yogurt for probiotics. No smoking but vaping light efluids was ok. I have lupus and ME and take immunosuppresants so I am considered at risk. Probably contracted at the dollar store. Initial symptoms were 1 degree body temperature elevation, sore throat, headache then progressed to mild muscle ache. It took about seven days to get bad, then crushing depression for a few days and severe fatigue (sleeping all day). The fatigue reduced my exercise tolerance so I could only walk about two blocks (versus being able to walk/jog up to 1 mile pre-infection) and had about 25% loss in lung capacity but it I didn't need oxygen, just rest and I felt the best eating mostly vegetarian during that period. It took about a month to feel over it.

For ME I take curcumin (C3 time release) which is anti-inflammatory along with a bunch of other apoptosis inducing supplements.

I avoided ibuprofen and only took acetaminophen and gabapentin for pain because ibuprofen was found to worsen covid.

The reason I did the low inflammation diet is because most of the damage to the lungs is from excess inflammation causing too much immune damage. Countries that follow low inflammation Asian diets (ie. Thailand, S. Korea and Japan, fish and vegetables diet) have half the death rates of Western countries. But the US government supports the food industries so they aren't publicizing how the American diet worsens covid and the information isn't widespread.

Interestingly, I never had a fever but I did have the other covid symptoms. I suspect the depression is caused by the virus and it was well treated with 24% CBD oil and positive self talk. It lifted as I recovered.

 

[Forebearance]

I began taking quercitin because Dr. Mercola said it would be useful in fighting COVID-19. It started a battle in my head that has been going on for two weeks.

During this (hopefully final) battle I have gotten to experience the profound fatigue that people say is associated with COVID-19. And I have noticed my senses of taste and smell improving. I hadn't realized they were affected!

The virus appears to want to live in my head forever. But I object to that.